I had b12 deficiency (152) in 2017 with negative IF factor. I was given loading doses and told I'd need injections every 3 months for life. I had 2 lots of the 3 monthly injections and then my levels were checked again and were 938 at which point I was told I no longer needed the injections. I knew nothing about b12 and assumed the doctors knew what they were doing so accepted this. 6 years on I have had ongoing fatigue, hair loss, night sweats, mouth ulcers, headaches, severe brain fog all of which I have put down to being a mum of young kids/being postpartum/breastfeeding. Am now 2 years postpartum and starting to worry it's something else. B12 levels in December were 455 so seen as normal but obviously quite a lot lower than the last time they were tested in 2017. Just wondering people's thoughts, could my symptoms be from another b12 deficiency even though I'm within normal range? Is it normal for b12 to gradually keep going down or is this a sign that my body isn't absorbing it and has just been running off what was injected 6 years ago? Any help appreciated. I've got an appointment to speak to the doctor next week I just want to be armed with as much info as possible. I don't know if it's relevant but I also have low neutrophil count from bloods taken last week (1.2) which are being retested tomorrow.
B12 injections were stopped a few yea... - Pernicious Anaemi...
B12 injections were stopped a few years ago, feeling awful
I'm so sorry you're suffering. What you describe can well be low B12 as well as low folate. Did you ever get a copy of the letter that stated you need "injections for life"?
I assume you are in the UK? I am not but many people here are, and lots of people have reported that their practices have "revised" who gets injections, and if you don't have a positive IF test, injections are being stopped. It is a sad and unfortunate affair! Up to half of people with pernicious anemia will have a negative IFAB test, so just because yours is negative doesn't mean you shouldn't be on life-long injections! I really can't fathom how doctors don't understand this, or ignore it.
So what are your options?
You can try writing to your practice and pushing for reinstated injections based on what they previously told you "injections for life", and that a negative IFAB test doesn't rule out PA. Here are some templates : b12deficiency.info/writing-...
You could also check off all the symptoms you have an include that in your letter . This is from the PA Society, a registered charity in the UK. pernicious-anaemia-society.... If you join, you can also ring them and they may be able to help.
You may also ask that IFAB is retested, and also ask for gastric partietal cell (GPC) antibodies to be tested, and if it's positive then that's already 1 step forward. pernicious-anaemia-society....
The Dutch B12 charity has good general info on PA/B12 deficiency (B12D) stichtingb12tekort.nl/our-e...
Many of us have resorted to self-injecting after being continually dismissed by doctors.
It's difficult to say if your B12 levels have been sustaining you this whole time. Do you take any B12 supplements or use energy drinks? B12 tablets can raise your levels without helping symptoms.
Here is also a long post by Sleepybunny with many resources, our resident expert in these things. healthunlocked.com/pasoc/po...
Thank you so much for your reply. I'll see if I can find a letter although I don't explicity recall getting one.
I'm now at a different GP surgery and will talk to the doctor about it next week, I'm assuming they'll say no injections so just wanted to be armed with some ammo to throw back their way if that happens. I'll ask for the tests you mentioned too thank you.
I had been taking prenatal/postnatal vitamins for the last 5 years or so which did have B12 in and which I stopped taking about 6 months ago. My last B12 test was taken while I was still taking these so I'll ask them to test that again too.
Thank you so much!
You're very welcome! The supplements could absolutely have raised your levels and made it appear as if your B12 was sufficient, without resolving any of your symptoms. Here is what happened to me: healthunlocked.com/pasoc/po... (it's in reply to another thread about OTC B12 but you'll get the gist).
However it's actually very good that you haven't been supplementing for a while, testing will be more reliable. I would push for full testing: serum B12, intrinsic factor antibodies, GPC antibodies, and if they'll do them: active B12, homocysteine, MMA.
Also ask for Folate, Vit D, and iron+ferritin.
Do you have any thyroid issues? Worth asking for TSH, FT4, FT3 anyway. Hypothyroid can cause some of the symptoms you mention. Quite a few people have both PA and hypothroidism, and if you have one autoimmune disease, you tend to collect more.
You can also cite NICE / BNF / BCSH guidelines but I don't have the links on-hand because I'm not in the UK and they block access to non-UK people. You might be able to google it eg "NICE B12 deficiency guideline" or similar. There is a diagnostic flowchart in one of those, and it includes an IFAB-negative flow - where the clinician should give treatment (injections) based on clinical signs. Especially if your previously low B12 was not due to dietary reasons (vegetarian/vegan), then you have a good case to push for injections, in my opinion.
[If anyone has those UK guidelines links handy, please post! I promise to bookmark them this time lol].
Excellent advice from jade_s .
I had B12 deficiency, found in 2016: 196 ng/L (with a range of 197 ng/L - 771 ng/L - so quite lucky there)
By the time I'd had the loading injections (6 in a month) and then a couple of the three-monthly injections, I was much worse. Struggling one day at a time to get through.
By this point, my B12 was over the measurable amount (>2000 ng/L) after my injection, and exactly two months later was 860 ng/L. Still over the upper limit.
Because I was so ill, my GP continued to look for a reason. She had my MMA tested - it was raised. This meant that she could diagnose functional B12 deficiency - where the B12 introduced reaches your bloodstream, but does not make the vital connection with methylmalonic acid (MMA) to then enable it to proceed to cell/tissue level. This causes a build-up in the bloodstream of both MMA and the injected B12 - but cells and tissue still starved of B12.
Renal problems and SIBO need to be ruled out as a cause for raised/high MMA - the first with a blood test and second with a series of fasting breath tests.
Crucially, all the other tests did not give any indication of a problem (although some were later results, after more frequent injections):
FBC (normal), Active B12 test (high), homocysteine (7.2), IFab (negative 3 times over the years), gastric parietal cell antibody test (negative), folate (5.5)* and ferritin (46.3)*
(Vitamin D must have been low, as a later Dexascan found osteoporosis of the spine and osteopenia of the neck so now on daily prescription along with Raloxifene)
* These last two were low but within range and remained unstable for a couple of years of closely-monitored supplementing, ferritin dropping to 36 later on. GP told me that below 60 can produce symptoms, Oral Medicine consultant prefers mine to be 80 or above.
The MMA result gave me a diagnosis which allowed the GP to request 2 injections a week. Finally, I started to very gradually improve, so this continued. This was a first, I think, as the nurses were all highly reluctant - but it was evidently working. My GP and I were happy with this progress - others, not so much. I imagine she met with some considerable opposition.
Well, all good things come to an end, so I did eventually need to continue with frequent injections myself to prevent deterioration. Because of this, my MMA finally dropped into range from a constantly raised position three years later - but I find that I am not able to reduce the B12 injections without a return of symptoms. Cognitive ability, short-term memory problems are the most obvious of these indicators and probably first. Yawns, tiredness and low mood following. Burning tongue a constant though - hence the Oral Medicine appointments.
Thanks to having such a dedicated GP, the search for either a cause for the functional deficiency or an alternative diagnosis continued throughout this time. Since extensive tests ruled out all other possibilities, I can only assume that her diagnosis was correct, this is my sole problem - and frequent B12 injections for life the only way to continue controlling symptoms.
Thyroid : two of my sisters have Grave's disease (autoimmune thyroid condition) so I thought best to have a complete range of thyroid tests. Although my thyroid was unsurprisingly struggling at first, I have been lucky there too. This package of tests was not available on the NHS to my knowledge. I had a posted fingerprick kit with online results privately. TSH, FT4, FT3 can be tested on NHS, but not anti-TPO and Anti-TG which are the autoimmune results.
Make sure you get all the tests you can, and whittle down any supporting evidence: take with you only a few key pieces of current medical research or UK-based medical professional advice to back up your request. They will be more likely to take it seriously and read/discuss it !
I wish you very good luck and let us know how you get on.
Thank you so so much both for all the information. I've just had my bloods retested for low neutrophil and was able to get them to add on serum B12 to that one, chatting to the doctor re. results next week so I'll discuss the other tests you've mentioned and in the meantime will read up on all the info you've both shared thank you so much. Xx
Hi Hullaballop,
Quick reply as going in and out the house today.
Apologies for any abruptness.
I'm assuming you're in UK. Let me know if you're outside UK.
Have you considered writing a letter to GP outlining your concerns?
Link about how to write letters to GP about B12 deficiency
b12deficiency.info/writing-...
Did you have gas and air mix during your labour?
Gas and air mix contains nitrous oxide.
Nitrous oxide inactivates B12, so the body can't use it.
Nitrous Oxide
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Nitrous oxide has been in the news this past year due to young people suffering ill effects from using nitrous oxide whippets.
The NHS page on pain relief in labour says nothing (when I last looked) about nitrous oxide inactivating B12.
nhs.uk/pregnancy/labour-and...
Link outlining current NICE guidance on treatment for B12 deficiency.
cks.nice.org.uk/topics/anae...
If you're in UK, I urge you to track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. Not sure about NI.
If you can't find them online or by searching this forum, best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some local B12 deficiency guidelines in UK are not helpful. See blog post below about a UK area that has unhelpful B12 deficiency guidelines.
b12deficiency.info/gloucest...
List ICBs in England
nhs.uk/nhs-services/find-yo...
Antibody Negative Pernicious Anaemia
Diagnostic flowchart below is from a UK health document (it mentions Antibody Negative PA).
stichtingb12tekort.nl/engli...
PA
If you suspect PA (Pernicious Anaemia) have you considered joining Pernicious Anaemia Society?
You do not need a confirmed PA diagnosis to join.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
Coeliac disease
Were you tested for coeliac disease?
NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.
More info on Coeliac UK website about diagnosis.
coeliac.org.uk/information-...
It's possible for a person with coeliac disease to get a negative result on usual coeliac blood test if
1) they have IgA deficiency
2) they were not eating enough gluten before blood was tested
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
I'm not medically trained.
"I also have low neutrophil count "
If you have the time and energy, you could search online for "Cytopenia B12 deficiency".
Cytopenia is when there are lower than normal numbers of particular blood cells.
Neutropenia is when there is a lower than normal number of neutrophils.
Have you had a good look at your most recent full blood count results?
Links about Full Blood Count (FBC)
Ok so i've had some results. Serum B12 has gone down from 455ng/l in December 2022 to 295 on 29th June and now 206 on 12th July. Yet to speak to doctor but surely this is evidence enough that i'm not absorbing it? Waiting on IFA result. My serum ferritin level is also low, 22ug/l, is this likely to be related too? Ferritin was 57 in December 2022. I was taking supplements which had B12 and iron in in December 2022, I stopped taking those around March.
Hi Hullaballop , yes that does point to malabsorption issues!
Many of us do seem to have low ferritin, that can be due to low stomach acid as often seen in PA, but can also be from hypothyroidism or other causes. It's best to get a full iron panel before supplementing iron, as it can be toxic if you don't need it - and low ferritin does not automatically mean low iron.
Did they test folate ?
When you get all your test results back, I suggest putting up a new post, rather than replying to this one. Posts older than a few days tend to get lost in the mix. 
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